Finding The New Normal

Posted on October 29, 2011 by Tracy Seekins

I think the hardest thing about living in pain every single day is learning your own limitations. Doing too much in a given day will make your symptoms worse, but we all crave to live a normal life.

Different people living with Fibromyalgia are often at different stages and levels of the disease. Some people have no problem continuing to work, going for 5 mile walks, going shopping, or any number of other activities. While others are in so much pain and at such a progression of the disease that they cannot do much more than go to the bathroom before they have to lay back down.

Sadly I have recently learned that even people with Fibromyagia are not always understanding of others with the same condition who are living with different capabilities. This being the case I know that it is that much harder for people who are not ill to understand those of us who are living with limited capabilities.

When I first got my diagnosis, I was still of the mind that I wasn’t going to let it stop me from being ME. What that meant was I was still going to do all the things I normally did, going bowling, going for walks, dancing, playing with my children, cooking, going shopping, and numerous other activities that are necessary as well as my enjoyable ones.

I quickly learned that this was not possible. At the beginning of my diagnosis I was only 26 years old. I became depressed when I couldn’t do as much in a day as I wanted to. I became depressed when even my husband didn’t understand my pain. I became depressed because I couldn’t go out and be what I thought was ME.

Slowly over a few years I began to develop a new me. I learned my limitations and lived within them. I made choices about how much I could do in a day and what I would include in that. There was a lot I could still do. I could still do everything I enjoyed and needed to do, just not all in the same day. So I learned to prioritize and schedule better.

As the years have gone by and my disease has progressed. I have lost the ability to do much that I used to. Slowly, over time, my body has become more painful and less co-operative. I can no longer go bowling. I developed bursitis in my right shoulder and the pain of bowling is simply too much. I cannot go for long walks because my hips and knees can’t handle it anymore and the exhaustion lasts for days. I still take short ones when I’m well enough though.

Standing for long periods to cook or do dishes is excruciating so we try to do the dishes as they are used for less standing and my wonderful husband, who now understands and helps me greatly, does a lot of the cooking.

Shopping was becoming challenging. I could walk through about half the store before my body gave out but then I was stuck, so now I just grab a riding cart even if I feel good, because why take the chance and I can always take a walk later to make up for what I didn’t walk in the store.

Life with Fibromyalgia is a constant adjustment. You might start out in a very bad place but then find your balance and realize it’s not so bad. You might start out not so bad and then get worse over time. You might be one of the lucky ones to is pretty mild and remains that way.

Every one of us is different. We all struggle and suffer with different symptoms, pains, and capabilities. Some days will be worse than others for every one of us. Some days will be better too. And on those better days embrace it. Don’t overdo it but enjoy it. Go out into the sun and be grateful for the moment in time that is better. And on those bad days remember that you are not as alone as you might feel. Others are struggling right by your side.

Learning to live with Fibromyalgia is a challenge, but it is a challenge we can face. We can learn to adjust as needed and live our new normal. And in that new normal we can learn how to be happy once more.

Tears!

Posted on October 28, 2011 by Tracy Seekins

As I sit here watching the Raid on Occupy San Diego, I cannot help but cry.

So many of these kids are the age of my children. Many are the age my daughter would be. They are so strong. They are supporting our 1st amendment rights.

Even if you don’t support the “causes” of the movement, you have to support their bravery of practicing our 1st amendment rights.

And to watch the violence of the police, the aggressiveness with which they execute these raids, is so sad. Tears roll down my cheeks as I watch in shock and horror. Tears for the brave young men and women who are doing what they believe in peacefully. Tears for the police who think they are doing right but are so aggressive. Tears for our country.

Let us remember this. The first amendment gives Freedom of Religion, Press, & Expression. Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

Own It!

Posted on October 28, 2011 by Tracy Seekins

How I must look to a stranger, with my jaw popping around all the time, with my tiny frame held up by my cane or sitting in a riding cart at the store. What they must think when they see me, or talk to me and my jaw is floating back and forth or I’m stretching it because it hurts so.

What people must think of me when my body pops and cracks as I move, as I stand from the cart to get something and a gunshot comes from my knee that echoes across the store. What they must wonder when I sound like bubble wrap as I move.

It occurred to me, as I sat in the early hours of dawn this morning, that people who do not know me, who do not know my diagnosis, must think I look strange when the see me. As my jaw pops and cracks this morning and does its typical floating painfully back and forth. I began to look at myself from the eyes of a stranger. I wondered what it must be like to interact with me when suddenly my jaw takes on a life of its own, the TMJ I suffer from simply doing its normal routine as I try to live my life.

Further I began to think about the times that I pop and crack in public. Here at home when I send off a loud pop from a knee or my neck, my husband and I laugh or make some joke. I wonder what people think when I am out and it happens. Or when suddenly I sound like bubble wrap and my whole body simply pops and snaps as I move.

I have actually often wondered what people think about the 90 pound woman riding around in a drivable buggy at the market. I can’t walk all that time that it takes to shop without seriously detracting from the rest of my day and possibly the next, so I have resigned myself to its use. But I look relatively young and I’m so tiny. It has to make a stranger wonder a bit.

Not that I care so much what others think. I have to live my life and honestly people are going to think what they want no matter what I do. I know my limits and I try to live by them. I know my capabilities and I embrace them.

But in these early morning hours my mind wanders as my body does it’s routine. I look at myself and even I wonder how I ended up this way. I wonder why I was given such a burden to carry and if I ever might get even some relief or if it will only get worse over time as it seems to have been doing since I was diagnosed at 26. And now at 40 the fibromyalgia and all it’s accompanying ailments sometimes make me feel like I’m 80.

And then I remember who I am! I am not my body. I am not my pain. I am just ME. I own and accept the burden I was given with this body that is in such a painful condition. I own and accept my popping and cracking. Relief would be nice and certainly appreciated but even if it never really comes, I will continue to live my life the best I can. I will continue to move forward, even when it hurts. I will continue to be who I am and the rest I will live with. When you don’t have a choice about your pain, you still have a choice about your attitude.

Violence in Oakland

I am shocked and appalled at what I saw happen in Oakland California in the early morning hours of Tuesday October 25, 2011.

If you are unaware of this action, this violence, this attack on the first amendment, then please see the video that I am including at the end of this post. Sadly I am afraid that the videos might not last as long as this blog does so I’ll do my best to fill you in with my words as well.

In the early morning of Tuesday October 25, 2011, dozens of police swarmed Frank Ogawa Plaza where hundreds of protesters had set up their solidarity Occupation movement encampment. These police were armed with flash bangs, Tear Gas, and a Sonic Cannon. They were dressed in full riot gear and came equipped with gas masks.

Briefly they gave warning that the protesters needed to disperse. They surrounded the encampment and announced that any and all of the people within needed to leave immediately, though their locations and full riot gear made this a daunting idea. People would have to cross this line of surly looking, aggressively dressed, police in order to comply.

Within minutes of this one brief warning the officers began throwing flash bangs and teargas canisters into the unsuspecting crowd. The officers shot people with rubber bullets, causing serious injury to a few.

Mothers tried to get their children out of harms way but were choked with Tear Gas and found themselves unable to escape the ever growing cloud and the panicking people around them. Disabled people, some in wheelchairs, were trying to make their way out when the tear gas hit and found themselves in the middle of a scene unlike any we have previously witnessed during this peaceful worldwide protest.

News crews and unsuspecting people working in the surrounding buildings found themselves suddenly and unexpectedly within a cloud of smoke that burned their eyes and throats. For them there was no warning, these were innocent bystanders and unsuspecting citizens simply doing their jobs or going about their daily lives.

As I watched in horror I couldn’t help but wonder what kind of person would order such a drastic and violent action be taken upon people who have been so careful to remain peaceful. What monster could order such measures be taken on an encampment where there could be innocent children or people unable to move quickly such as the person in the wheelchair who didn’t make it out before the chaos began?

I began doing a bit of research and watching many posts go up on different sites about what was happening in Oakland. As I did so I learned the name of the individual responsible for this action, Oakland’s Mayor Jean Quan.

In my research I was led to a post on her Facebook page that was a response to the mornings enforcement actions. I’m including it as an image below.

What? Peaceful resolution? Is she serious? 

When I last looked there were over 1900 comments below that update and none of them in support of this Mayor. People from around the world are shocked and disgusted by this violence upon the American People.

Let us remember this. The first amendment gives Freedom of Religion, Press, & Expression.
Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

What is Next?

On the livestream this evening I watched as two very different, very vibrant, people came to the microphone with the following thoughts.

The first man, Max, said he was feeling the loss of purpose. He had been at the Occupy Wall Street encampment since day one. At first he felt that it wasn’t going to go anywhere, then as more people arrived he thought “this is going to really go somewhere”, and now he is back to wondering where it is going and how.